Tuesday 12 March 2013

Numero Due.

(This scene from Bridesmaids is not unfamiliar.source)

Once upon a time going to the loo was just another boring part of the day. Like most people I went, did what was necessary, and then headed out to continue my day, with nary a thought for the process. There was even a time long long ago in a galaxy far far away, when I could fart without fear. But not now, not these days. My days of enjoying a nonchalant relationship with my ablutions is long past. Dysautonomia with a side of neuropathy, has turned normally uneventful loo time into a death-defying act.

If you are clueless, be thankful. I am quite jealous of your ignorance in the ways of loo complexity. Long may you live in ignorance of the ways of a busted gastric system and the joys of explaining your poo in detail to every medical professional you meet.

There are two ways to go with this illness: Dysmotility or Gastroparesis where your stomach slows to the point of barely moving and you can end up constipated or even impacted. Or, you can end up like me at the other end of the spectrum. Where your gastric system has seemingly been clubbing and ingesting copious amounts of speed when you weren't looking, and you are blessed with constant diarrhoea and fun things like Dumping Syndrome.

There's also this tricky problem whereby pooing (or even peeing) can trigger your vagus nerve. Or just to mix it up (ie your vagus nerve is a dick), when stimulated, this particular nerve can trigger your need to pee or poo. YAY. Sometimes, I feel oh so lucky. My body was not content with simply having my recalcitrant bowel which has meant that I have lived with the trotts every day for two years. No, that was not enough. To up the ante it decided that every time I need to poo, my vagus nerve must be triggered. This has meant that I have nearly passed out on the loo more times than I can count. This of course brings a whole new level of worry to my life. Lets face it the last thing you want is to wake up on the floor of your bathroom only to find yourself decorated in your body's foul offerings. Or, God forbid, on someone else's tiles, or worse, manky public tiles.

You see, at this point, I pretty much need Bear Grylls to come along and do a Man vs Wild episode in my bathroom. I'm sure he could teach me some handy toileting survival skills, or at least how to start a fire with left over toilet rolls and nail clippings. I draw the line a pee-drinking though, Bear can keep that one all to himself.

It all goes a little like this:

1. Eat or drink, anything.
2. Resign yourself to the fact you'll need to go to the loo within the next half hour (on a good day) or next five minutes (on a bad day).
3. Wait for the first hot flush. Ask surrounding family members if they are hot. Have them look at you with a raised eyebrow. Answer with a short sarcastic, "no" and a clearly implied "Dumbarse!" You'd think I'd have learnt by now. But hey, a girl's gotta live in hope.
4. Feel the first wave of nausea and short stabbing stomach pain.
5. Delude yourself that you can wish away said heat, nausea and pain.
6. Some how forget that each time you try to wait, or will it away, it makes it ten times worse.
7. Start to get greying vision and muffling of sound.
8. Decide this is the perfect time to stumble to loo (rather than two minutes before when you could still coordinate your legs).
9. Lurch to feet, grab at door frames and towel rails in the mad dash to the loo. (Tip for the day: towels move on the towel rack and are not a suitable stability aid and you may end up on your arse or sliding your way to a face plant in the toilet bowel.)
10. Start desperate internal dialogue of "I think I can. I think I can".
11. Get to loo just in time for full pre-syncope, hold onto wall and shower glass, brace, and hope for the best.
12. Invoke names of all know deities, offer up first born son and kidneys, if only they will let you make it through the seemingly never ending hell without passing out/vomiting.
13. Ride the wave of foulness.
14. Suddenly realise it's over and start breathing again.
15. Be left a wrung out, weak mess, slumped on loo, with swollen purple feet thanks to the accompanying sudden surge in pooling.
16. Drag self to bathroom sink. Wash hands. Run cold water over pulse points in wrist and wash face.
17. Celebrate that you made it through once more with dignity mostly intact.
18. Make way slowly out to couch. Suck down some fluids and resume normal functioning/nanna nap.
19. Repeat multiple times throughout day.

This process of course can be complicated by:

A) a particularly unpleasant day where you go through Steps 1 through 18, after which you lie/fall on bathroom tiles/crawl back up onto the loo/grab your puke bag/do your best Mt Vesuvius impersonation both ends/breathe/regain enough presence of mind to fall gracefully back onto tiles/crawl back on loo/....rinse and repeat. This process can go on for hours and may end in multiple bruises, much whimpering, and all round woe-is-me.

B) being out in public. These days I plan my trips by toilet availability, and public toilet cleanliness. For example. I know if I am heading into St Vincent's Hospital, there is a clean pit stop at the 1/2 way point at the Blackburn Nth Maccas (I can also grab a handful of salt sachets on my way out). Or if it's a bad day there are three shopping centres, with okayish/bearable public loos, between home and Blackburn Nth. I also know the independent petrol station near the Chandler Rd turn off is sympathetic to a pasty-faced, slightly incoherent and panicked woman with a cane, and lets them use the staff bathroom no questions asked. I also know the placement of all the public loos at the hospital and where Mr Grumpy can drop me off in a rush. Though I did find out the hard way, and with some pitiful tearing, that the reasonably clean public loos near the florist out the front of the hospital is closed on weekends. I can apply such knowledge to my local cafes, shopping centres and in a pinch sections of road with good tree/bush coverage in case it's a desperate au naturale moment.

It should also be noted that even without food or water this toilet fun time can also be triggered by:

1. Standing.
2. Walking.
3. Sitting in a car.
4. Heat.
5. Lack of water.
6. Exertion.
7. Breathing.
8. Mercury being in retrograde.
9. Spilling some salt, walking under a ladder, kicking a kitten in a former life, or.....
10. .......a day ending in y.

Oh, for those long lost days of toileting freedom. Who knew that something so simple could become so complex or restrictive? Or that I would be buying Imodium in bulk? Or have so many doctors view, explore and probe my nether regions? Or long for solid poo, like others long to win lotto? 'Tis a sexy and dignified life I lead.

But what can you do? As Doris Day would say, "Que Sera Sera".

Michelle :)

Doris Day, Que Sera Sera (1956)


  1. oh wow. That sounds like the least amount of fun ever. Once upon a time I experimented with lots of laxatives and I have never wanted to repeat that again. Ever. But I had a choice and it only lasted 24 hours. Not my every day. I cannot even imagine! Sending lots of solid binding vibes and I hope the clean public toilet fairy is a step ahead of you always.

    1. It's not exactly a funfest, but what can you do? I will definitely take those solid binding vibes ;)

  2. ahhhhh yes, the simultaneous explosion from both ends! Something I have experienced only a handful of times, and hope to never again! I am also familiar with most of those steps, especially the pretending it might go away - for me usually followed by realising it's now actually too late, and that fresh underwear will be required :P

    1. HA, Claire! So many of us living such a sexy life. I do always carry a spare pair of undies for the 'just in case' times. Stupid bodies. xx

  3. Thank you, thank you, thank you! This is me! Yesterday I spent an hour on the toilet, never ending, I'm sure more comes out than goes in. Gave up dairy 5 months ago as that seemed to make it worse but still getting it at least once a week rather than daily. So frustrating when you can even see your medication has passed through you without being digested as your body just expels everything. I take my phone to the toilet with me so I can emergency dial whoever is around to help me so I don't crack my head on the sink or bath as I pass out on the toilet, or ask for cold water to rehydrate me as I have gone red and sweated out any remaining water I had, glasses sliding down my nose...I won't eat out now or even have a coffee for fear of not being near a toilet or being emarrassed by the noise or smell.
    I'm sorry you are going through this too. It is horrible.

    1. So sorry you're in the same position Jam Jar. I have altered my diet to account for all my allergies and intolerances, eat Imodium each day, was treated for SIBO, the list goes on and on...and still it's the same situation. My gastro just gives me his 'pity face' when I see him now.

      Every time I write a post about this aspect of the disorder I get so many emails, messages etc from people in the same boat, and yet my doctors never talk about it. No wonder we all feel so alone with this kind of thing. xx

  4. I was experiencing similar problems before I dropped gluten. Now, I go the other way and pray for things best unheard here. I feel for you. That was a miserable existence. I felt like I was in some Prometheus story and that no matter how much I ate, I was doomed to lose it immediately in a horrible manner.

    1. It's a shocker isn't it. Something most people never think about and yet it can be so debilitating when it all goes wrong. Can't go or can't stop going, neither is a good situation. xx

  5. Thank you!
    This is exactly what happens with me, yesterday I spent over an hour on the toilet. The most frustrating part for me is seeing my meds have just passed straight through. I stopped eating dairy over 5 months ago as dairy made me need the toilet within 5 mins, now it is approx 30 minutes after eating anything!
    I take my phone with me so someone can rescue me from cracking my head on the sink or bath or fetch me cold water to cool down and rehydrate with the sweat that makes my glasses slip down my nose!
    I don't like going out anyway but will not eat or drink anything but water/rehydration drinks as I worry about where the nearest toilet is, the noises and the smell.
    Oh the joys.
    I'm so sorry you suffer in this way too, it is horrible.

    1. It is sad when you have to ask people to come check on you if you're gone too long or if they here a thump :(

  6. OH LORD . . . we are more alike than I thought. I need to read your blog from the beginning!

    (as for my own blog I hid it a few days ago because nerve pain was making it uncomfortable for me to type. I need to figure out how to unhide it now - because recently I came across a few things in the nutritional realm that have helped a LOT - seriously no spells since last November !!!! - - - but rather than evangelize here I should probably just write about it chez moi)


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